{"id":30420,"date":"2020-11-05T12:17:00","date_gmt":"2020-11-05T17:17:00","guid":{"rendered":"https:\/\/wfh.org\/ya-esta-disponible-el-informe-del-sondeo-mundial-anual-2019-de-la-fmh\/"},"modified":"2024-04-22T14:34:34","modified_gmt":"2024-04-22T18:34:34","slug":"ya-esta-disponible-el-informe-del-sondeo-mundial-anual-2019-de-la-fmh","status":"publish","type":"post","link":"https:\/\/wfh.org\/es\/article\/ya-esta-disponible-el-informe-del-sondeo-mundial-anual-2019-de-la-fmh\/","title":{"rendered":"Ya est\u00e1 disponible el Informe del Sondeo Mundial Anual 2019 de la FMH"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"30420\" class=\"elementor elementor-30420 elementor-30340\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-208db97 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"208db97\" data-element_type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-d4e7515\" data-id=\"d4e7515\" data-element_type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-1eaf8fd elementor-widget elementor-widget-text-editor\" data-id=\"1eaf8fd\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}<\/style>\t\t\t\t<div class=\"vc_row wpb_row vc_row-fluid mpc-row\">\r\n<div class=\"wpb_column vc_column_container vc_col-sm-12 mpc-column\" data-column-id=\"mpc_column-32622f794517021\">\r\n<div class=\"vc_column-inner \">\r\n<div class=\"wpb_wrapper\">\r\n<div class=\"wpb_text_column wpb_content_element \">\r\n<div class=\"wpb_wrapper\">\r\n\r\nEl Informe del Sondeo Mundial Anual (SMA) 2019 de la Federaci\u00f3n Mundial de Hemofilia (FMH) ya est\u00e1 <a href=\"https:\/\/wfh.org\/es\/recoleccion-de-datos\/#ags\" target=\"_blank\" rel=\"noopener\">disponible en l\u00ednea<\/a> (en ingl\u00e9s; las versiones en espa\u00f1ol y en franc\u00e9s estar\u00e1n disponibles pronto). El informe contiene datos demogr\u00e1ficos y relativos al tratamiento de personas con hemofilia (PCH), con enfermedad de Von Willebrand (EVW), con otras deficiencias poco comunes de factores de la coagulaci\u00f3n, y con trastornos plaquetarios hereditarios, en todo el mundo.\r\n\r\nLas organizaciones nacionales miembros (ONM) que contribuyeron a este informe enfrentaron m\u00faltiples desaf\u00edos en la recolecci\u00f3n de datos debido a la pandemia de COVID-19. No obstante, el sondeo de este a\u00f1o tuvo una elevada tasa de respuesta del 82% y abarca datos de 115 pa\u00edses, siendo Trinidad y Tobago y Kuwait las naciones encuestadas m\u00e1s recientemente incluidas en el informe.\r\n\r\n&nbsp;\r\n\r\n<strong>N\u00daMERO DE PA\u00cdSES en este sondeo<\/strong>\r\n\r\n<\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3830069 elementor-widget elementor-widget-image\" data-id=\"3830069\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t<style>\/*! elementor - v3.23.0 - 25-07-2024 *\/\n.elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=\".svg\"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block}<\/style>\t\t\t\t\t\t\t\t\t\t\t<a href=\"http:\/\/shiny.wfh.org\/ags\/\" target=\"_blank\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"586\" height=\"100\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img1-Nov2020.png\" class=\"attachment-full size-full wp-image-30363\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img1-Nov2020.png 586w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img1-Nov2020-192x33.png 192w\" sizes=\"(max-width: 586px) 100vw, 586px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-042637b elementor-widget elementor-widget-text-editor\" data-id=\"042637b\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\tEl informe ofrece datos sobre m\u00e1s de 324,000 pacientes: 195,263 PCH, 80,302 personas con EVW, y 49,083 personas con otros trastornos de la coagulaci\u00f3n poco comunes.\r\n\r\n&nbsp;\r\n\r\n<strong>N\u00daMERO DE PACIENTES IDENTIFICADOS Personas con hemofilia Hemofilia de tipo desconocido Hemofilia A Enfermedad de Von Willebrand Hemofilia B Otros trastornos de la coagulaci\u00f3n<\/strong>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-85e732b elementor-widget elementor-widget-image\" data-id=\"85e732b\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"http:\/\/shiny.wfh.org\/ags\/\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" width=\"596\" height=\"190\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img2-Nov2020.png\" class=\"attachment-full size-full wp-image-30367\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img2-Nov2020.png 596w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img2-Nov2020-192x61.png 192w\" sizes=\"(max-width: 596px) 100vw, 596px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-40e25e5 elementor-widget elementor-widget-text-editor\" data-id=\"40e25e5\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\tLas medianas del uso per c\u00e1pita de factor VIII y de factor IX se calcularon en 1.058 y 0.155 unidades internacionales (UI), respectivamente.\r\n\r\n&nbsp;\r\n\r\n<strong>USO PER C\u00c1PITA DE USO PR C\u00c1PITA DE FACTOR VIII FACTOR IX 1.058 UI 0.155 UI Mediana (0.174-4.312) (RIQ) Mediana (0.017-0.673) (RIQ)<\/strong>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0024147 elementor-widget elementor-widget-image\" data-id=\"0024147\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"http:\/\/shiny.wfh.org\/ags\/\" target=\"_blank\">\n\t\t\t\t\t\t\t<img decoding=\"async\" width=\"598\" height=\"156\" src=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img3-Nov2020.png\" class=\"attachment-full size-full wp-image-30371\" alt=\"\" srcset=\"https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img3-Nov2020.png 598w, https:\/\/wfh.org\/wp-content\/uploads\/2022\/03\/news-AGS-2019-img3-Nov2020-192x50.png 192w\" sizes=\"(max-width: 598px) 100vw, 598px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e1e2eca elementor-widget elementor-widget-text-editor\" data-id=\"e1e2eca\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\tEl informe de este a\u00f1o tambi\u00e9n ofrece un nuevo an\u00e1lisis que ilustra las desigualdades a escala mundial en el diagn\u00f3stico y la identificaci\u00f3n de pacientes. Usando la nueva prevalencia de la hemofilia se calcul\u00f3 el n\u00famero esperado de PCH, lo que hace de este informe el m\u00e1s exhaustivo hasta ahora. Estos datos est\u00e1n disponibles para la comunidad de hemofilia con el prop\u00f3sito de reforzar la importancia del diagn\u00f3stico precoz.\r\n\r\nEl SMA contin\u00faa mejorando y sigue siendo uno de los recursos clave para la comunidad de trastornos de la coagulaci\u00f3n. El uso de estos datos puede mejorar las actividades de investigaci\u00f3n y de cabildeo, as\u00ed como las decisiones sobre pol\u00edticas p\u00fablicas a escala mundial. La FMH agradece la ayuda y la participaci\u00f3n de todos los pa\u00edses que continuamente han apoyado nuestros esfuerzos de recolecci\u00f3n de datos.\r\n\r\nPara tener acceso al Informe del Sondeo Mundial Anual (SMA) 2019 de la FMH haga\u00a0<a href=\"https:\/\/wfh.org\/es\/recoleccion-de-datos\/#ags\" target=\"_blank\" rel=\"noopener noreferrer\">clic aqu\u00ed<\/a>. Hay gr\u00e1ficas y cuadros complementarios\u00a0<a href=\"http:\/\/shiny.wfh.org\/ags\/\" target=\"_blank\" rel=\"noopener noreferrer\">disponibles en l\u00ednea<\/a>\u00a0a fin de proporcionar m\u00e1s informaci\u00f3n sobre los trastornos de la coagulaci\u00f3n. Si desea conocer m\u00e1s acerca del Sondeo Mundial Anual escriba a\u00a0<a href=\"mailto:globalsurvey@wfh.org\" target=\"_blank\" rel=\"noopener noreferrer\">globalsurvey@wfh.org<\/a>.\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>El Informe del Sondeo Mundial Anual (SMA) 2019 de la Federaci\u00f3n Mundial de Hemofilia (FMH) ya est\u00e1 disponible en l\u00ednea (en ingl\u00e9s; las versiones en espa\u00f1ol y en franc\u00e9s estar\u00e1n disponibles pronto).<\/p>\n","protected":false},"author":3,"featured_media":30344,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[204,362],"tags":[],"search-category":[],"class_list":["post-30420","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-investigacion-y-recoleccion-de-datos","category-sondeo-mundial-anual-sma"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v23.4 (Yoast SEO v23.4) - 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